Posted
by
JonKatz
on Wednesday December 08, 1999 @10:00AM
from the Victor-Frankenstein-was-a-piker dept.

The Human Genome Project, often referred to on this site, may be the most inspiring and disturbing technological project in contemporary history. It embodies the often tragic drama of contemporary technology: well-meaning people trying in the noblest way to improve the world; setting in motion forces few ordinary people understand, agree upon or are prepared for.

The Human Genome Project may be the most inspiring and disturbing technological project ever undertaken. This is the first time we've decided in so organized a way to alter the nature of life itself.

The project is a metaphor for everything that's both right and wrong about technology: well-intentioned people are using it to try to make the world better; at the same time continuously unleashing forces we haven't fully considered or agreed upon, and can't or won't control.

During the past few years, as many Slashdot readers know, scientists all over the world have begun a coordinated, systematic effort to create a complete biochemical description of the human genome - the DNA contained in the chromosomes of human cells - and to develop a genetic map indicating which components of this genetic material determine certain human traits, from depression to disease to susceptibility to addiction to eye color or artistic ability.

The project began in l990, part of a global effort co-ordinated by the U.S. Department of Energy and the National Institutes of Health. Though its founders expected the project to last 15 years, advances in computing have accelerated the completion date; now it's only three years away. The goal of the human genome project is nothing less than to read and record the entire string of (at least) three billion letters in human DNA . According to a progress chart on the project's website, the progress towards mapping the genetics of human beings now stands at 36 per cent.

Aided by new supercomputers that analyze, store and distribute data faster that was thought possible even a few years ago, geneticists believe they have already identified the location of genes identified with dozens of disorders, including cystic fibrosis, some forms of mental retardation and Huntingdon's disease.

Supporters of the project hail it as a means of eliminating disease, emotional disorders and other forms of human suffering. But the risks and ethical dilemmas are staggering, especially considered against a backdrop of scant serious discussion anywhere in the world, certainly not in the United States.

Could employers and insurance companies obtain an individual's genetic information? Could government agencies or law enforcement authorities use genome research to invade privacy and predict behavior? Could prospective spouses demand DNA screenings to reject unsuitable mates?

Perhaps, most likely, will parents beginning using the results of genome research to begin the process of seeking out the "Perfect Baby?" To screen sperm and egg for, size, IQ, cloning, emotional and physical health?

There is no scientific consensus as to how far this project can go, or how quickly. Some geneticists have argued that the genome project is a pipedream, that the dream of unraveling the strands of human life are much more complex and mysterious than any scientific project can really grasp. But the history of genetics, supercomputing and technology all suggest that humanity is entering a new, inevitable era in the use of technology to alter human life, a direction that makes Victor Frankenstein's primitive experiments look like a crossword puzzle.

The genome project evokes a world practically bursting with technological hubris, a universe in which all children would be born healthy, and suffering would be greatly reduced. What could be nobler or more inspiring?

And there is a darker side to this radical project, even though few people in our society are considering it much. We have set out on a project whose goal is to alter the nature of human existence, without the interest of a single national political leader or a single Congressional debate (this in a country in which the mere mention of sex on the Internet sends legislative bodies into hyperdrive).

In effect, children may be given genotypes, genetic profiles. Offspring considered grotesque, revolting, impaired, repugnant or offensive could be eliminated.

How many parents will choose ugly kids when they can be assured attractive ones? Why have an idiosyncratic or rebellious offspring when you can choose a cheerful and pliant one?

Biomedical ethicist Leon Kass is one of many scientists who worry about the pace of genetic research as well as its moral consequences.

"When a couple now choose to procreate," he writes in the eighth edition of "Technology and the Future," edited by Albert Teich (Bedford/St. Martin's), "the parents are saying yes to the emergence of new life in its novelty, saying yes not only to having a child but also, tacitly, to having whatever child the child turns out to be."

Our children, he writes, are not "our" children or posessions; they aren't supposed to live anyone's lives but their own. In altering the nature of new life, parents can not only live vicariously through their offspring but completely shape their lives.

Genetic screening is only one of the moral dilemmas our culture will soon face as the result of fast-moving genetic research. Scientists and biologists are nearly unanimous in their belief that within the next decade, someone, somewhere in the world will clone the first human being.

Given the history of technological breakthroughs once this technology has been unleashed, it's a near certainty that cloning will be used to create children. The nature of technology and much of the controversy and complexity that surrounds it is that people disagree about goals. Some parents will find it noxious to bring cloned humans into the world, others will find it irresistible, even noble.

This kind of social technology - conceived with the noblest of intentions - is not containable. It has no real direction beyond the fact that skilled scientists with powerful tools want to do it. In fact, not doing it seems as inconceivable as doing it.

But we're kidding ourselves if we think the only result will be the eradictation of some diseases and human suffering. Too many people will want to use it, too much money can be made off of it. The convergence of capitalism, technology and genetic engineering will be explosive, especially in a society as technologically thoughtless as ours.

Some forms of genetic selection - rarely labeled what they actually are - are already in widespread use, from genetic screening to prenatal diagnosis. They've already raised lingering ethical questions, only infrequently disseminated by journalists, politicians or scientists.

A quarter century ago, biologist Bentley Glass wrote of "The right of every child to be born with a sound physical and mental constitution, based on a sound genotype; the inalienable right to a sound heritage."

Maybe so. But is this a universal right, or one extended only to affluent people in industrial societies with access to advanced medical technology and generous insurance plans? What about developing and Third-World nations, where few will have access to Perfect Baby technologies? What about despots and dictators who might want to use genome maps to create certain kinds of communities and nations?

Have we really thought through the implications of unleashing medical procedures that would reduce the incidence of addiction, depression, retardation and physical disabilities? Are we comfortable living in a world in which whose categories of humanity - the retarded, the blind, the disabled - will disappear from our part of the earth? Do the healthy lose something when it's possible to eradicate the impaired?

Will the rights of children really be protected, or will the ultimate result of such pell-mell, until -recently- unimaginable tinkering be a world in which people are no longer distinct from one another - a humanity that's universally attractive, intelligent, able-bodied and eyeglass-free?

Jules Verne and H.G. Wells are most often credited in our culture with predicting the future, but both had spotty records. Increasingly, the writers who seems to have had the clearest bead on the 21st century were Orwell, author of "1984" and Aldous Huxley, who wrote "Brave New World," both foresaw the growing social movement towards conformity and the use of technology to shape and control culture.

But even he wasn't quite far-sighted enough. He thought government would be the force most likely to peep into our bedrooms, gather information on our tastes and behavior and pressure us to dress, talk and think uniformly.
In this at least, he was mistaken.

In the 20th century, the most repressive forms of government - Communism, Fascism, Apartheid, Nazism - have collapsed or been defeated. Their efforts to censor culture or employ technology to control behavior have failed.

The most powerful institutions in our time aren't evil governments but powerful corporations with billions of dollars to conduct research, gather information and shape culture and society.

Modern corporations - Microsoft comes to mind - are not intrinsically evil, and have no political or ideological goals beyond money, but they are frighteningly powerful and influential, bigger than most governments on the planet and obvlivious to their own impact on creativity, freedom and individualism.

A generation ago, who could have imagined that one company would have its software in more than 90 per cent of the personal computers in the world?

Whatever the Genome Project ultimately does or doesn't uncover, it won't be Nobel Laureates and non-profit groups that get to control it or decide how this awesome new technology will be sold and used. It will likely be corporations, the only institutions in our society with enough power to acquire and manipulate mass markets.

In a world where people who want to have kids offer attractive men and women tens of thousands of dollars for their sperm and eggs, what might people pay for the Perfect Baby? And who do you think will control and own the patents and peddle the genetic maps?